Hi all, I've read the few threads that are already on mn re. this subject however most discussions are "old" & few threads were concluded in anyway!
I've posted briefly before as ds2 has large cafe au lait & I was wondering what people knowledge was re what this could mean. Id told myself when we attended paeds consultant appt last week that we would be told ds was fine & not to worry, obviously this was wishful thinking as one of the first symptoms of nf1 is indeed these patches, we've been told diagnosis unlikely to be made either way until ds 5/6yo - I am panic stricken how can we wait 5 years with this hanging over us, I'm constantly stripping ds off looking for further patches developing, I am going to make myself ill with worry! So generally I'm wanting some advice or info from people more knowledgeable/ experienced with children with this condition!!
Help anyone?? Please??
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Neurofibromatosis 1!
21 replies
Booville3 · 21/03/2014 20:52
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